Neuropathy

finallyoverit

Anyone come across anything to help with neuropathy? I had scrambler therapy several months ago and it worked.. but I need to go back for a few follow up appts.. just can’t make it work with my schedule right now.

I’m on gabapentin and honestly, I’m not sure it actually works. I have burning and pain in my leg and knee that is 24/7 and exhausting. I’m hoping someone has found something to help. I can’t live the life I want to because of the pain and I’m quite pissed off about jt

Bestbird

I'm sorry to hear you're dealing with neuropathy. Below from my book, "The Insider's Guide to Metastatic Breast Cancer" (which is also available as a complimentary .pdf) is a list of medications and non-drug remedies that may be helpful in easing neuropathy, and they're described more fully in the Guide. For information about contending with side effects, cutting edge research and more, visit https://www.insidersguidembc.com

I hope you feel better soon!

Antidepressants

Anti-seizure Medication

Low Dose Naltrexone

Muscle Relaxers

Nerve Blocks (including Epidurals)

Over the Counter Drugs (OTC)

Pain Pump

Strong Opioids

Weak Opioids

Remedies other than pain medications for peripheral neuropathy-induced pain include:

Acupuncture

Alpha-Lipoic Acid (ALA)

Amino Acids

Calmare Scrambler Therapy

Capsaicin Cream

Exercise

Herbs

Infrared Heating Pad

Lidoderm Patches

Massage

Milkweed Balm

Nerve Repair Optimizer

Neuropathy Support Formula

Physical Therapy

Penetrex and other topicals

Reiki

Shoes that are Comfortable

Topricin Pain Cream

Transcutaneous Electrical Nerve Stimulation (TENS) unit

Anotherone

hi

Not sure it will help but will do no harm - vit B6 (or may be the whole B group?🤔) and alpha lipoic acid 600mg twice a day

finallyoverit

Thanks for the suggestions, ladies. I am so frustrated with it, my mind went to a very dark place this weekend. I’m in pain 24x7 and really frustrated that I can’t live the life I want to. Just makes me wonder, is it worth it? I have no kids and no spouse.. so why the hell am I enduring all of this?!

moth

I think the evidence based intervention is duloxetine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC39125...

You could also tweak your gabapentin dosage if you don't think it's working. How much are you on? I'm on 300mg bid

the taxol threads usually recommend:

b6 100 mg daily (i'm currently trying P-5-P version which is supposedly the more bio available version of B6. Not sure if it's better than regular B6 from my perspective but I'm super motivated to stay on this taxane as long as as I can)

l-glutamine 30g/day (many people divide it into 2 doses) if you don't have any liver issues & your dr ok's it.

Exercise is also evidence-based though the RCTs I've seen evaluated exercise during chemo, and not so much after treatment.

But, the more blood flow to the area the better. Nerves can sometimes heal and renegerate and they do grow but they need oxygen and nutrients so need a good blood flow. I've read suggestion massage can also help due to the same mechanism of stimulating the nerves and increasing blood flow.

Spindi

Hi finallyoverit,

So sorry for you! Which additional drugs besides gabapentin you've tried for neuropathy? I also tried gabapentin, it didn't work for me too, now I'm on pregabalin (Lyrica by Pfizer or many other brand names). It's also gabapentinoid & was developed as a successor to gabapentin. "Pregabalin's use in cancer-associated neuropathic pain is controversial, though such use is common." (from Wikipedia). I'm the example of no pain relief (or very short-lived effect) by gabapentin (doses as high as 3000 mg/day) but good response from pregabalin (dose as low as 75mg).

I also had extensive neuropathic pain in legs. 24/7. No sleep at all for 1/2y. Total exhaustion. Burning pain in thighs, knees, calves, feet; also shooting pain in pelvis or thighs; feet numbness or tingling, freezing, etc. I tried all sorts of remedies, as well as vitamin B group, but nothing helped. Only temporarily while doing for example massage balls or TENS or hydrotherapy. Even in hospital I was allowed to increase a dose of gabapentin but not received any opioids. After my diagnosis was confirmed my MO prescribed Tramadol (weak opioid) right away but I didn't need it! What I also like that pregabalin differently from gabapentin acts so much quicker after taking it. At first I took 2x75mg. It was such a difference from gabapentin - I finally could sleep! It's neuropathy so it's still here but now only in feet & manageable. Sometimes I think about reducing the dose further but the terrible memory is still so alive…

Maybe pregabalin could work for you too? Best of luck to you!

PAKNC

I had terrible nerve pain in 2020 in my jaw for several months and burning tongue due to nerve damage from a bad dental surgery. I've also had sciatica in my back, and now have some kind of pinched nerve in my shoulder/neck area which causes intermittent tingling in hands. I was on gabapentin too when I had the mouth nerve pain, and wasn't sure it did much for me. These are a few things that helped me get back to a manageable level of pain - reducing pain from unbearable to like a 1 or 2 out of 10. Make sure you get a referral from a respected clinic or knowledgeable healthcare provider. There are differences in providers. Don't give up - it may take time to resolve and find the right provider/s.

Physical therapy - learned ways to stretch the nerves and strengthen muscles; intermittent fasting on Prolon (I was desperate, I was willing to try anything to get rid of the pain. Fasting can help with nerve repair); Acupuncture - cupping (this was extremely helpful for me), and needles with a doctor of Chinese medicine; Registered dietician / nutritionist - started me on Vitamin B, some magnesium, etc. There are some vitamins/minerals that can help with nerve repair and muscle pain for some people. I noticed a difference immediately with my burning tongue when I started the Vitamin B supplement. Work with a professional because there are differences in the quality of supplements and you don't want to overdo it.

Anotherone

my heart goes off to you , finallyoverit.

Those are eternal questions - what is worth it , what is not...

I hope you will find a solution - it may well exist. Hugs.

OhioNana1605

I bought this book but it is too technical for me. I’m 76and need more basic info. I hope it is helpful for others in the MBC stage 4 group though.